A mother of teenagers, wife of a farmer, parent advocate for parents of eating disorder patients, major contributor to the Around the Dinner Table forum, writer of short information films, Expert Carer for the Eating Disorders team at the Maudsley and Breast Cancer survivor

Listening to Start the Week with Andrew Marr this morning I was struck by Jonah Lehrer's contribution on creativity but particularly by this:

"You can look at this in how scientific publishing has changed over the last 50/60 years. It seems to be becoming a much more collaborative process that many scientists now argue that the era of the Lone Genius is now over. Our problems now exceed the capabilities of the individual imagination so we now work together or fail alone."

and

"I think there is one thing to make very clear when one talks about Neuroscience, whether it's in terms of falling in love, or looking at a Rembrandt or having one of these incidents of insight, it is easy to look at these terms of research, to look at these pretty silhouettes of the brain with splotches of primary colour saying, "Here's what happens. Here's the spot of activity when you fall in love." We neuroscientists don't use the language of "Nothing but". We don't say this is nothing but a surge of electricity in the V4 part of the visual cortex. I think neuroscience, at this point especially, is just another way of knowing ourselves, is just another layer of description to add to our many other kinds of description."

Rachel O'Reilly went on to describe how she was "locked down" in a hotel with various other scientists from all over the world and they were given a variety of problems to solve. She was extolling the virtues of this kind of interaction and collaboration among scientists - crossing borders, specialisations and dogma - working together, not failing alone. I know it is a dream of a few of us Parent Advocates to be able to afford for such a "lock down" with various eating disorder clinicians.

Friday, 27 April 2012

Happy 60th Birthday to Professor Treasure, one of the all time dedicated, caring and kind clinicians in Eating Disorders world.

Her bio c/o the Institute of Psychiatry website.

BIOGRAPHY

Professor Treasure is a psychiatrist who has specialised in the treatment of eating disorders for over twenty years. The Eating Disorder Unit at the South London Maudsley Hospital NHS Trust is a leading centre in clinical management and training of eating disorders. The unit provides eating disorder services for a population of 2 million in south East London and accepts specialists referrals from throughout out the United Kingdom. She was chairman of the Physical treatment section of the UK NICE guideline committee. She is the Chief Medical Officer for the Eating Disorder Association (the main UK eating disorder charity) and is the trustee of the Sheffield eating disorders association. She is on the Academy of eating disorders accreditation committee. She has also been active in both research over this time and has over 150 peer reviewed papers. In 2004 was honoured to be awarded the Academy for Eating Disorders (AED) Leadership Award in Research (This award honors an individual who has over substantial period of time ( i.e., 10 years or more) developed through research new knowledge about eating disorders that is internationally respected and that has had a measurable impact on the field, either by significantly furthering our understanding of the etiology of eating disorders, by changing treatment or by fostering new lines of research). The unit is active in research and development in all aspects of eating disorders treatment, biology, clinical problems etc. Professor Treasure has been a co-coordinator of a multicentre European study that is examining the genetic and environmental factors in the management of eating disorders. Professor Treasure was also Vice Chairman of a European project examining the effectiveness of treatment of eating disorders in over 20 countries. Professor Treasure has edited four texts on eating disorders “Neurobiology in the Treatment of Eating Disorders” Ed Hoek K, Treasure J, Katzman M (1997) & “Handbook on Eating Disorders”, Szmukler G, Dare C & Treasure (1995) (edition 1 &2) Wiley and, Owen, Treasure & Collier (2001) “Animal Models of Eating behaviour and body composition “,Kluwer Academic Publishers The Netherlands. She has authored 2 self help books, one on bulimia nervosa "Getting better bite by bite” and one for parents and teachers as well as sufferers themselves on anorexia nervosa "Anorexia nervosa; a survival guide for families, friends and sufferers". She is working on developing manuals & CD Roms to describe working with individuals and families of people with anorexia nervosa. The ethos of both the research and clinical practice is to work collaboratively with carers and users and to use new technology to further this endeavour. The web site www.eatingresearch.com hosts information for all stakeholders, users, carers and professionals. Together with the Eating Disorders Association the team at the Maudsley have help carers conferences. Currently we are involved in an International study in which we are examining the factors that cause anorexia nervosa to run in families and we are recruiting families in which more than one family member has an eating disorder.

This session will address the controversy in the field regarding the language we use to talk about eating disorders. In particular, this plenary will explore the pros and cons of the use of "brain disorder" language as well as the impact that such language can have on the ways in which we and our patients (and their loved ones) think about and respond to eating disorders. The overall goal of this plenary is to view this controversy from multiple perspectives and then try to move us forward as field with respect to this issue.

Learning Objectives:
• Explain why a "brain disorder" model is viewed as optimistic, supportive, and useful by many parents and carers.
• Describe the degree to which the experimental literature has noted potential problems with a "brain disorder" model.
• Discuss how language such as "brain disorder" may impact how people view eating disorders and potentially impact course.

There has been a discussion on the forum about it and the inimitable Christopher has done his research on the second speaker. Laura has also blogged about it.

So whilst soaking up the mountain air in Italy, I asked myself how I justify using the term "brain disorder" (as per NIMH) to describe an eating disorder and I worked out that it boils down to appropriate guilt.

"Guilt and its handmaiden, shame, can paralyze––or catalyze one into action. Appropriate guilt can function as social glue, spurring one to make reparations for wrongs. Excessive rumination about one's failures, however, is a surefire recipe for resentment and depression." (Psychology Today)

By using the term "brain disorder" and avoiding the psychobabble of blame ("attachment issues" for example or searching for a "cause" or believing that this is a willful act by the patient), a parent can move forward with refeeding to restore the patient to optimum function, a mental and physical state wherein the patient is well enough to move forward into recovery, where therapy avenues can be explored and where life for patient and carer begins to return to "normal".

Laura has empowered so many parents to help their children recover. The most important thing for us, as a family, was to learn that this was not our fault. Nor was it my daughter's fault. It was a brain disorder.

Wednesday, 25 April 2012

So I spent a lot of time thinking about the Fairy Blogmother, when visiting my brother in Italy. Why? Because his house is located about three quarters of the way up the "hill" on the north side of one of the most southern glacial valleys in Italy.

The views are quite spectacular. You can see the harsh gouges left by the mighty glacier on the landscape and almost hear the creaking and groaning of the protesting, retreating ice.

What it has left behind is a view of stunning beauty, a fertile valley strip of almost medieval fields and farming.

which runs from the mountains, Monte Sibillini (Umbrian-Marchean mountains) in the East

to the glistening blue Adriatic at Pedaso in the east (with the spectacular rainbow)

Although you feel on top of the world, when looking out from the terrace at the view, there is still a way to climb up to Monterubbiano.

And why was I thinking of the Fairy Blogmother? She has, for a while, likened the advancement of new treatments, ideas and theories for eating disorders as melting a glacier with a box of matches. While I was away, soaking up the atmosphere, this was published. I reckon this was worth a couple of flame throwers worth in the melting stakes.

Laura, if the melting glacier leaves behind the awe inspiring, massive, breath-taking views that I experienced in Moresco, the end result will be spectacular.....

Wednesday, 18 April 2012

The phone goes at 7.30 am to say that a close relative is in hospital with a serious but non-life threatening problem. How do you react?

Me: Say "Oh my God" alot, rush round kitchen throwing things into handbag, grab car keys and set off for hospital at furious pace. Put on full headlights and emergency flashers. Hunch up over steering wheel with furious frown, shout at other drivers to "Get out of the way, coffin dodger" (because, of course, they should telepathically be able to tell that I am on a LIFESAVING, EMERGENCY MISSION).

Slide into hospital car park on two wheels, park badly in first available space, run up steps into hospital, bowling sick people out of the way because MY RELATIVE IS IN HOSPITAL DON'T YOU UNDERSTAND THAT I NEED TO SEE HER? Pant my way to reception to ask directions - takes a long time to get them due to unavailability of breath to make myself understood and queue of people in front of me who don't seem to understand that THIS IS A CRISIS.

Another attempt at sprinting to the relevant ward. Which is closed due to ward rounds. No amount of "DON'T YOU UNDERSTAND THIS IS MY MOTHER" is going to get me past the Ward Sister and "borrowing" scrubs and passing myself off as a Ukrainian surgeon is also a no-goer. Sit for two hours on uncomfortable orange (Why orange? Why always orange? It is NOT a cheerful colour!) plastic seat, twiddling thumbs, humming to myself and generally driving everyone else completely bonkers.

Go back to car, pay £7 million parking ticket, return home, gather list, return to hospital. Relative now "resting comfortably" (ie asleep). Leave 16 plastic bags full of "stuff" for relative and say to Ward Sister that I will return this evening for visiting hours. Ward Sister rolls eyes and mutters something that distinctly sounds like "Must you?" under her breath.

Return home. Pace. A lot. Phone family and friends. Get bored telling the same old story and having no actual news. Make tea. Pace more. Get phone call from hospital. She'll be being discharged this evening.

Mother and I are off to Italy on Thursday to visit her "baby boy" (all 6ft 2, 53 years of him!).

Whenever Mum goes to see them, the temperature plummets, the rain rolls in and we all shiver. Sure enough, this year nothing has changed. Having been dry for the whole of April, the rain starts today and is looking for set for the next ten days.

So no sunbathing, eating on the terrace or squiggling our toes in the sand. Instead we will have to go shopping. Luckily, Le Marche is the shoe manufacturing capital of Italy and is awash with "factory shops" - poor me......

Monday, 16 April 2012

I understand what drives people to become therapists. I am one of those overhelpful labrador types and, at times, become overwhelmed with an urge to help "fix" other people's problems. This can be detrimental to both my personal wellbeing and that of the family. It doesn't stop me trying.

One thing I have learnt on the Around the Dinner Table forum and at the patient hands of the Fairy Blogmother, is that my experience is not anyone else's experience and what worked for me/us as a family, may be harmful to another family. What I always try to do is share that it is MY experience and not a blue print for treatment for anyone else.

In the strange twilight world of eating disorders, there is no one solution and no clear cut furrow to plough to help your loved recover. The essential cornerstone of starting recovery is normalising nutrition, restoring the patient to a weight range that enables their body and brain to work at optimum function and guarding against further damage to internal organs (brain included) and other terrible physical problems that come alongside malnutrition.

I have mimbled before about clinicians becoming too bogged down in their own particular theories and I continue to rant on a regular basis that Hilde Bruche's work was based on clinicial observation - the plural of anecdote is not data and all that.

However, now and again, I come across a "therapist" whose views are so downright misguided and dangerous that I fear for her clients' wellbeing and recovery.

A note to patients and parents (and other clinicians), if you come across an eating disorders' specialist who writes a blog, as titled below - run, run, run, preferably executing a scorched earth policy behind you as you go, so nobody else gets subsumed by the Dementor.

Saturday, 14 April 2012

So the nice man from Lindseys came to sort us out. He wasn't our usual engineer but he was a lovely man called Jim. He fixed the leak in the boiler, so we can have the central heating on. He was unable to fix the problem of the water coming out of the overflow, despite doing something technical with the speed and the thermostat and he confirmed my suspicion that a new boiler would really be the best option, come the summer.

HWISO, with the aid of a phone, a laptop and an adjustable spanner fixed the automatic top-up system for the pool.

Which leaves the radiator in my bedroom. The gremlin radiator. The last radiator on the system.

We live in a very old house. Accordingly to our listing in the Listed Buildings, the core of the house is c.1560.

"House, formerly farmhouse; c.1700 with core of c.1560. 2 storeys and attics,4 windows. Timber-framed and plastered; the ground storey walling along thefront elevation is of painted red brick. Plaintiled roof with two axialchimneys of c.1700 red brick. Four plaintiled gabled dormers of c.1700; thewindows have original wrought iron casements formerly with leaded glazing.C18 3-light casements, with segmental heads and transomes at ground storeyonly. Late C18 or early C19 entrance doorway: a 6-panelled door (the upperpanels glazed), and flat canopy on fretted brackets. In the hall is a fullyexposed ceiling of heavy and richly moulded joists of about 1560, the joistswith roll and scotia mouldings, the main beams with an ogee. The front wallmay originally have been jettied at this section. Some other framing at thecentre of the house is probably of C16 date, but remodelling andreconstruction included extensions to right and left in plain but substantiallate C17 carpentry. 2-tier butt-purlin roof."

This 1560ish chimney runs through my bedroom. The front of the house is brick, replaced in the Victorian era and the back is good old fashioned wattle and daub and timber. We live on heavy clay soil and our foundations are about 3 bricks deep so the house moves the whole time, depending on how much rain we have had. This does not bode well for rigid copper pipes.

Anyway, the gremlin radiator has developed a leak and required a lot of resoldering, new bits of pipe, new valves and various other "bandaids" at least once every two years for the past 20 years. I have also got quite used to living with two small Tupperwares under each end of the radiator that need emptying on a semi regular basis, when the central heating is on. For the past two years, the radiator has not even been turned on because of the mega-leak we had a few years ago and the resultant chaos of two huge dehumidifiers going night and day for 3 weeks, a new carpet and repainting of the room underneath.

So I made a radical decision. Let's just get rid of it. Let's cap off the pipes and remove the radiator entirely. After all, it was taking up valuable wall space, looking pretty ugly and not serving any useful purpose.

I have talked endlessly about set shifting and HWISO and I did feel sorry for poor Jim, the engineer, as I very firmly "persuaded" HWISO that No, we did not need to keep the radiator where it was "just in case", Yes, I was quite sure and No, it wouldn't take any value off the house.......

We have been bemoaning (again) various problems including Non-fat phobic AN.

This is where someone presents with full blown anorexia nervosa but does not have the preoccupation with weight and shape, so beloved of Fairburn et al (and the DSM!). The fear tends to centre around change itself, rather than the physical manifestation(s) of that change - a sort of OCD/anxiety. Whilst researching the Transdiagnostic model and reading about Glenn Waller's eggs, I came across this from Fairburn, which contains this:

"There is a new way of rating the Dietary Restraint subscale items such that restraint for the purpose of gaining a sense of control in general is rated, as well as restraint intended to influence shape or weight"

This is where I do think that Fairburn needs a bit more Gestalt and to move away from HIS obsession with fat phobia. Once outside his beloved weight and shape concerns, it is like someone puts a blindfold on him and he reverts to Hilde Bruche for an explanation and comes up with "it's all about control".

Now I happen to believe that the weight and shape concerns have two roles to play in AN.

The first is very tentatively connected, very tentatively but, in the eyes of the mass media is the major "cause" of an eating disorder. That primary role is that someone may decide to go on a diet because they are unhappy with their weight or shape. My understanding of eating disorders goes along the lines that weight loss is a (if not "the", but ELT or GFA will probably come up with some sciency alternatives) trigger that pulls the genetically loaded gun, that fires the bullet that is the AN. Why people lose weight or, most importantly, don't gain enough weight (during/after a growth spurt, due to extreme physical training for a sport, due to an illness etc) is for a myriad of reasons and tend to be more to do with general disconnect and social anxiety than an overwhelming urge to get "Elle"'s body.

Ergo, weight and shape concerns may be an environmental factor (among many, many others) that contribute to an initial weight loss or lack of weight gain at an important developmental stage.

The second role of weight and shape is as a symptom of AN. Many of us have heard weight and shape concerns, especially at the extreme depths (or end stages) of an eating disorder. I do not disagree that many patients, plucking desperately at flaps of paper thin skin, may believe that they are "fat" and that eating a piece of chocolate would instantly turn them into the human equivalent of a pregnant hippo. However, I have argued that this could be an expression of extreme anxiety and fear that is too complicated to be put into words. This anxiety needs to be expressed in terms that society will understand and our society is obsessed with "fat". I even got Carrie Arnold to half agree with me.

Ergo, in my opinion this weight and shape concern is expression of anxiety and is not the disorder itself, merely a symptom of it.

Interestingly, I have recently been exploring the world of NLP therapy. I like the idea of NLP for treatment of eating disorders because, unlike Fairburn's NICE approved, clinically tested CBT, it does this:

"NLP does not have the same model of "problem" and "solution" as clinical psychiatry. Instead its model is based upon helping clients to overcome their own self-perceived, or subjective, problems rather than those that others may feel they have"

Maybe Fairburn should stop insisting that everyone over 18 with an eating disorder has "weight and shape concerns" and maybe NICE should stop insisting that CBT is the only therapy. Perhaps we should be helping those with eating disorder overcome their problems and not treating them for problems that we feel they should have.

As a farmer, that kind of upsets me. I like to think of carrots having enough soil to do what they do naturally, not be forced to grow the wrong way - Jeez, listen to me. Time for a glass of wine.

Aw! But they are a special carrot breed which are supposed to be round, I didn't force them to end up spherical. It's only the size which is influenced by the container, not the shape. I was sad that I forgot to thin them out so they weren't bigger, but their roundness was entertaining!

FREE KATIE'S CARROTS! FREE KATIE'S CARROTS! I'll rehome them.....

They'll still be round! They were born that way!

That's what they all say......

You can't force my carrots into your preconceived notions of what a carrot should look like. You should think carefully about what society has taught you about carrots. I know your experience dictates that carrots should be long and thin, but these carrots are genetically short and fat. You'll put them all at risk of disordered eating if they hear you saying things like that!

Thursday, 12 April 2012

We are under siege from the leak fairy - first the central heating overflow, then the radiator in my bedroom, then the automatic top up on the swimming pool and now the boiler itself. I suspect Anglian Water are going to arrive to see if we have defied the hosepipe ban, the amount we are leaking.

Now HWISO and I are negotiating the night rota for emptying the containers under the leaks, so we don't wake up awash tomorrow morning.

Wednesday, 11 April 2012

What language means to you

I'm preparing a slide for my presentation at the upcoming AED conference in Austin. My job is to explain why the parent community finds biological explanations for eating disorders more helpful than other terms. I've heard hundreds of such comments over the years and want to share some of these quotes to an audience that is skeptical.

I want your quotes!

Why do YOU find biological language helpful, if you do? What "lightbulb" moments have you experienced about this? When was the first time you heard that EDs might have a biological basis?

Make them short, and tell me who I can say said them, e.g.

"When I realized our son's strange behavior was something wrong in his brain I stopped being angry and started giving him the support he needed to get well." B. R., Oregon

"The Minnesota Study changed everything for me. It was about the food, at least for a while." T.T., Brisbane

P.S. No, I'm not saying or asking you to say that experience, environment and parenting don't matter. Just what role biological, genetic, nutritional, brain circuitry, brain chemistry, brain anatomy, etc. play in your attitudes and your actions around your loved one's eating disorder or your own eating disorder or your clients' eating disorder.

I have spent 3 days in bed with a particularly vicious bug, which has resulted in a charmingly snotty cold. One side effect was a ragingly high temperature - I was hovering around 102 mark for a while. Whilst twisting and turning my aching limbs, lathering up my sheets and feeling sorry for myself, I came up with some great ideas for blogs, solved the mysteries of how to explain brain disorders in analogous form, worked out a kink or two in my understanding of the pathology of anorexia and had treatment protocol implementation all sorted.

Now I am better - sore,snotty, dehydrated and hungry but better, the only wisp of my grand visions that remain is a slightly demented email to the Fairy Blogmother. Sigh. Still she like the demented email so perhaps all is not lost.

Friday, 6 April 2012

I have been asked to blog for the TalkHeath Partnership about eating disorders, about which I am deeply flattered. It does mean I have to start from the very beginning with an introduction to eating disorders.

I am hoping to produce a short succinct blog about "What is an Eating Disorder" but I keep going off on a tangent. There is a danger I could confuse people with my sidetracking. My problem is set shift overload and inability to focus. I like to think in technicolour.

I texted a friend yesterday saying I was in Dante's 7th Circle of Hell. In fact, I think I was in his 8th. Welcome to Top Shop, Oxford Circus during the school holidays. Whilst waiting patiently beside a mountain of bags, mainlining water (it is SO hot in there) and trying to look non-furtive whilst Em queued for 20 minutes for the changing room, I received an email from my Dad.

The title of the email was

ARE YOUR TEENAGERS DRIVING YOU MAD?

He then sent me a link to this. I replied "Thank you. I think." The Twofour Group look very grown up and produce some good stuff. Anyone who is interested should contact them directly.

I do admit to looking round TopShop to see if Dad was there, giggling in a corner, watching me try to look nonchalant in a totally alien environment. Of course, he wasn't there. I don't think my father knows what Top Shop is. However, I am beginning to think he may be a bit telepathic....

Tuesday, 3 April 2012

There was a very short segment on aquagenic urticaria yesterday on the radio and I thought I would do a short "poor me" post on what it is like to live with this.

Moisturiser is my best friend. For example, on Sunday, I spent half an hour with gardening gloves on - loose fitting ones - and I got through a whole tube of Neutrogena that afternoon. I have tubes in my car, my handbag, by my bed, in the kitchen, the sitting room and the bathroom. I buy at least one large tube twice a week.

Wearing my wedding ring depends on what I have done during the day. Yesterday, I cleaned one bath which means my hands swelled and my wedding ring sits in its little pot in the kitchen until the swelling goes down enough for me to get it back on - maybe later today? I cannot wear any other rings. Bracelets irritate, necklaces itch. Earrings are OK.

I have to think about what I am doing during the day when I get dressed. I cannot wear socks all day, as they make my feet sweat. If I am going out in the afternoon, I make sure not to wear socks in the morning.

If I wake up hot and sweating in the night, I have to immediately throw off all the bedclothes to ensure that the sweating stops and dries as quickly as possible.

I cannot wear tight fitting clothes or any man made fibres. Sometimes, the red welts from a tight fitting bra take up to 12 hours to disappear.

I cannot swim.

I can shower briefly, with loads of Oilatum.

I cannot have a bath.

Peeling potatoes can result in agony.

Most nights my hands are so hot, itchy and swollen that I want to take a cheese grater to them. Running them under cold water to cool them down is NOT an option......

I cannot wear gloves to wash up in, peel vegetables, clean baths, take clothes out of the washing machine, empty the dishwasher, wipe the table, etc. - they make your hands sweat!

I cannot go anywhere without an umbrella and a hat....just in case. I live in England!